Hi everyone it's going to be a very chatty
one today. I filmed a video around this time last year maybe a bit later actually saying let's
talk about life while I clear out my wardrobe. I filmed one a few years ago saying let's do origami
and talk about things, so today I am going to be making something which I'll talk to you about in
a second and I also just want to talk to you about life things. As an aside before we get into live
stuff does anyone else feel like their smart speaker is judging them? I don't know if it is
or if I have been watching too much Black Mirror, reading too much dystopian, I am reading Klara and
the sun at the moment so that may have something to do with this but I've been feeling this way
since way before I was reading that book, so for context Mr M and I during ‘the times that we
find ourselves in’ have been playing lots of board games and we tend to play a game called Battleline
every lunch time because it takes five minutes to play and it's got to that point where it's a game
that we like playing but you're not thinking about it too much while you're playing, it's great.
Anyway so we always ask our smart speaker to flip a coin before we start playing to see who's going
to begin the game and that's fine. Every day: heads, tails, whatever and then one day I asked
the smart speaker to flip a coin and it said “no” and I thought oh they can't have heard me
properly so I asked again and they said ?why don't you flip a coin?” Oh excuse
me, that’s the doorbell ringing. How cute, those were flowers from my mum, I'll show you in
a bit, we've taken it in turns to kind of send each other flowers during this past year, not
very often but you know every couple of months, so that's really sweet. Anyway what was I saying?
Yeah so I asked the smart speaker to flip a coin and one day they said “no” so I asked a second
time and they said “why don't you flip a coin?” so I asked a third time and it sighed and
it said “I'm a very intelligent device and all you ever ask me to do is flip a coin”
which also is not true (not the intelligent part but the only asking it to flip a coin part) and I
wanted to pick it up and throw it out the window, I really did. I know that it's a programming
thing, it's programmers having a bit of fun, right? If the device has asked this question
a hundred times make this be the response, so I was like “okay. well they've had their
fun now, I'm sure that won't happen again” but it does it keeps happening but it's different
every time and it won't be every day it'll be once every couple of weeks when I say flip
a coin one day it said “I've lost my coin” one day I asked it and said “I don't feel
like it” and it really I don't know I mean obviously it's just the way the world
is at the moment… it is funny but also not funny, really not funny. I didn't enjoy
it, my fault for getting a smart speaker, clearly going to take over the world, my goodness.
Anyway let's talk about why I have this material here and what I'm going to be attempting to make
this afternoon and it involves a little bit of a story time so this time last year Mr M and I
started going for walks at 5 00 a.m every morning, a year ago last week was when I started shielding
so it's been over a year of shielding for me and 5 am was the only time of day that I knew I
could leave the flat and not run into people so we were getting up early, crack of dawn,
sometimes before dawn, going out and walking for about 45 minutes and coming back home
and then we'd be inside for the rest of the day and we're really lucky we live in London
but there is a small wood nestled at the end of our street which feels otherworldly and
that has been so precious to us this past year and oddly it has fed into something that
I've been thinking about for several years anyway which is how I process things, how my mind
works. I'm very pattern based, I constantly draw parallels between things, trying to make sense
of stuff and I think that writers do that, it's why we are writers, we are constantly
drawing lines you know “if this happened, what knock-on effect would that have here?” and
I think humans do that to some extent anyway, we want to make sense of our own stories, our
own narratives and other peoples’ we want to make sense of the world around us and when
things don't make sense that's really scary and unnerving, and it's why I love studying
the history of fairy tales so much because stories and folklore like that is often borne
out of misunderstanding, the need to understand, of fear and trauma: hansel and gretel was born
out of plagues when people were abandoning their children in churches because they couldn't afford
to feed them; hans christine andersen wrote the little mermaid because he was in love with his
male best friend and he wrote a story about wanting to be like “everybody else” and fit in
but having to sacrifice parts of himself to do that and ultimately that would mean he would die.
There are so many things to talk about there and I've spoken about some of those things in my
history of fairy tale series which I'll link in the description box down below, but for a
while I've been working on a non-fiction book that discusses my my personal feelings towards
storytelling and what fairy tales I clung to as a young disabled child who was in and out of
hospital, what storytelling meant to me and the patterns that I saw in the media around me that
I was consuming. So a roundabout way of saying this time last year when we were going for
our 5 a.m walks, I was hunting for meaning everywhere and it was so weird because meaning
would seem to present itself and I'm not saying that the universe was telling me things, I'm not
saying that everything happens for a reason I'm really not saying that at all but I am saying that
we will look for meaning and we will take comfort in the meaning that we find and the forest
was providing me with so many of those things which was very …I was going to say ironic but
mostly just apt given that I was also writing about fairy tales, and the importance of the
forest, and how human beings have historically interacted with forests, why western fairy tales
are mostly set within them, why they're considered to be such a dangerous place where anything can
happen in the dark and we were walking there early in the morning when no one else was there
and it really did feel like we were stepping into other worlds. I was writing pieces about it so
it felt like we were walking into the belly of a fairy tale every single morning and I was finding
strange things there, was this flower that was carpeting one small part of the forest andI
looked them up and they were wooden anemone, let me read you what I wrote actually because
that will make more sense In the forest, we come across a bed of Wood Anemone. The
seeds of this plant are mostly infertile, so stumbling across large amounts of it
is seen as proof of ancient woodland. I crouch down to look, feeling the soil
underneath, which is soft, and this — according to Lewis Carroll — means that these flowers
cannot talk because they are fast asleep. The Wood Anemone’s sepals are white, not green,
which gives the appearance of petals — in fact, they look like pale, white buttercups. They
are delicate little things. Greek mythology tells us they sprouted from Aphrodite’s tears,
as she wept over the death of Adonis. The Romans believed that the first to flower, every spring,
should be plucked as a charm against infection. Folk would herd the ghostly flowers into their
arms, proclaiming: “I gather these against all diseases!” The flowers would then be tied
around the necks of the sick while they prayed. It starts to rain, so I stand up to go home,
pulling my coat close to me. The Wood Anemone closes itself in wet weather. Folklore would have
us believe that this is to keep fairies safe and dry inside their flowers. And even though, like
all anemones, the Wood Anemone is poisonous, it is said to have medicinal properties,
especially against respiratory infections. Ingest too much, however,
and you will die. In China, they call Wood Anemones the flower of death.
It just felt so strange to research the flowers that I was finding and find this particular
flower which was about grief but also about respiratory infections and death and infertility,
it was very strange given that COVID was happening and as I've mentioned briefly before
our IVFgot cancelled because of covid and that hit me really, really hard, it hit
me so hard because it had been something that had been on the horizon for such a long time you
don't just say “hey nhs I'd like to do some ivf please” and then that happens, it's not that,
it takes years and not only because of funding and the processes you have to go through for that
but also ethics boards and things because we're doing pgd which is pre-genetic diagnostic testing
to make sure that the child that we have doesn't have the medical condition that I have for a whole
variety of reasons which again I'm not going to get into here, so it’s been years and not only as
I said the funding, but also medical stuff for me, having scans to make sure that it would be safe
for me to be pregnant, so there was a lot of stuff that went on for years and mentally preparing
for it and then we got there and COVID… and ivf clinics were shut down and then when they opened
again I was still shielding, I'm still shielding, so couldn't go, the referral length is now a
long time, but there was a lot of stuff going on but going into the woods there was something that
happened which was so, so bizarre, we were going as I said every morning and we started to see this
fox cub every day, this fox cup who was quite far away to begin with very mischievous, it seemed
like he would play hide and seek with us, he would literally jump out of the hedgerows and then
when we got closer he would jump back in, he was behaving like a playful dog would and foxes can do
that and especially in london where they are very used to hanging out around humans, raiding their
bins, they're not scared of humans anymore, so I started to I suppose place meaning on this fox,
not in a very serious way but it came to mean a lot to me to see that fox cup every morning when
we went for a walk… you know if we saw this fox club things may be better, I used to do that as a
kid too, I think it's a coping mechanism for many people who have anxiety and especially medical
related trauma, you know you try and come up with these almost magical spells for yourself: if I
do these things then things will work out better, and you know that that's not going to be true but
it's a bit like a comfort blanket, it's like why people with anxiety enjoy watching the same things
over and over again because we know what's going to happen at the end and we can relax more while
we're watching it; I used to watch the same things and read the same books all the time when I was a
teenager I think specifically for that reason. So I saw this fox… this is a very long introduction
to this video, hi, I saw this fox every day and every day it started getting closer and
closer to us, obviously we weren't going to feed it or pet it or anything like that, it was just
delightful that it trusted us and it was really lovely and then one day when we went on our walk
there is a field before we get to the woods and when we got there the field was covered in litter,
so much litter, cans and plastic bags and bottles, people had clearly had a party the night
before and absolutely trashed the place and it was upsetting for a whole number
of reasons that someone would trash nature in that way at any given time but especially when
it felt so valuable to everyone who lived nearby, this green space was everyone's sanctuary, and
when we got there and we saw all that destruction and our fox club wasn't there, it was the
first day he wasn't there, he'd been scared off by the people who had had this all night party
and I was furious because I hadn't brought any bags or anything to pick up rubbish, why would
I have done that? And I couldn't go around picking everything up, I was shielding, I couldn't
touch loads of other things, so Mr M and I said to each other we'll come back tomorrow and
we'll bring gloves and bags and we'll tidy up, so the next day when we went we did bring gloves
and bags, we went to tidy up and someone else had already tidied up quite a lot of it but
there was still some rubbish so we started tidying up all of the plastic bags, crisp
packets, everything and as we were doing it the fox cup reappeared and he came out and he was
watching us tidying up in this really puzzled way, like “what are you doing?” and then when he
realized that we were taking the things away he started to steal the pieces of rubbish, so
he would run really close to us and he would take a plastic bottle and then he would run back
to the hedgerow and he would hide it somewhere and it was this game and obviously it felt kind
of bad that I was taking his rubbish away that he now wanted to keep but it's not good for him,
obviously, so we continued to pick up everything and then when there were only a few pieces left
he picked up a can and he was chasing round around it was almost like he was inviting
us to chase him and so we were chasing this fox cub round and round the field trying to
get this last piece of rubbish and eventually he just collapsed in a heap completely out of breath
looking like a happy exhausted child and it was the most peculiar moment but in that moment
things kind of felt okay, they felt okayit was a strange moment of joy… so this is all to say in
a roundabout way that strange things have happened in that wood that have helped me this past year
when things have felt very desperate and not okay, and last week I was very low and went for a walk
in the woods it wasn't at five in the morning but it was near sunset so it had this beautiful
light and I was walking along and something caught the corner of my eye and I was like
“what is that?” and I walked into the woods and a family have made some fairy clothes, they've
made some fairy clothes and they'd put them on a washing line and they'd hung them between
two trees and it was just really adorable, you have to be really looking for it, you have to
be paying attention to the surroundings to see it and as I crept around the corner of that washing
line of fairy clothes I realized they'd also made a little wooden fairy door and they'd put it up
against a tree trunk with a number seven on it, seven is very important when
it comes to fairy tales, and they left that there too and I just thought
it was so wonderful and childlike and amazing, and I decided that I would make some fairy
clothes too and I am going to attach them to this some string and then I'm going to go
to the woods this afternoon at sunset and I'm going to hang up another washing line of
fairy clothes in the hope that whichever child put that up it brings them some joy when they
see that. Let's start with a pair of trousers, this material in case you're wondering I've cut
some corners of my head scarves because when I wear headscarves I fold them over the tops of
beanies so I never use them in their loose form, so cutting a bit a tiny square from each one is
actually absolutely fine, so that's what I've done. Let’s start with a pair of trousers. Mr M is
also going to make a fairy door out of some wood which he's not going to do today, he's goingto do
in a day or two, so we can add little bits to this fairy forest as we go. I asked on instagram
for questions I said I was going to be doing a chatty video where I make things and did you
have any questions about anything that you wanted to ask me? So I have those questions here that you
sent in and someone said ‘do you prefer cooking or baking?’ and I'm not sure actually I think
baking is newer to me, I've only done that in this last year really but I enjoy doing both and I
especially enjoy blending both of those things so one of my favorite things to make is kebabs which
I do with the meatless farm company mince and tomatoes and cucumber, garlic sauce and chili
sauce, and then I'll make flatbreads so it's savory and it's cooking but it has an
element of baking, I guess ,same with things like pizza or making pasta, I enjoy
making pasta from scratch and that is cooking but it involves you know making things with
flour, so here's a little skirt. This weekend I have made some hot cross buns let me show
you… oh my god they smell amazing, it's the first time that I've made hot cross buns from
scratch so they have fruit inside, citrusy smell as well and they have this glaze on top which is
quite sticky and you can have them with butter. I like to have them with butter and a little bit
of cheese, not cheese melted on top, just a side of cheese, is that weird? I don't know. Anyway
I spent a long time making those this weekend because they need to be proved three different
times but I had lots of fun and I think I will make these in a reading vlog soon so I can share
the recipe with you because I altered the recipe that I was working from because of the ingredients
that I had to hand and they worked out really well so I will share that at some point soon. Someone
suggested that I make (because I mentioned on instagram also that I was going to make fairy
clothes) someone asked if I would make dungarees I mean I have to make dungarees right? So I will
try and make some actually one of the questions was also have I purchased anything recently which
I love and that has reminded me that down here is a parcel that has been quarantining
that I purchased from lucy and yak where I get most of my dungarees from so this is
not a pair of dungarees they always send their clothes in material that's been left over
from making saris in factories and they make drawstring bags with the saris which
are amazing and you can use them for wrapping gifts or keeping your clothes safe
whatever, I often use them for gift wrapping, but what I have bought from lucy and yak
and what is inside this story is a jumper, I have recently bought two jumpers from lucy
and yak the last one I think I wore in my last video and lots of you said you really liked
it especially because it matched the cover of one of the books that I was holding up but
I bought this other jumper and oh my look at it I think it's me in a jumper, it's quite autumnal
I guess because it does have leaves on and it is orange but I love it so, to answer that question
that's what I bought recently and thoroughly approved of. Someone asked me is mr m's work
book related? Absolutely not, it is not though he does work with language and I don't mean
that in a translation kind of way, he's not a translator, he doesn't work with foreign
languages, but his job is rooted in language itself so I guess there are similarities there
but I would say minimal ones. Another person says “what did you study at uni, where did you go,
was it your first choice?’ I went to edinburgh university to study english literature and
wherever I was going to go I wanted to study english literature but when I applied I
applied also to cambridge and to durham and to nottingham I think and northumbria.
Northumbria was my backup option for if something happened with my health or with anything else
and I wanted to stay at home because I'm from the northeast of england and to be fair edinburgh it's
not that far away either and durham I guess is also not very far away at all but less commutable.
I would like a pair of dungarees in this color. So yeah I got to the interview stage at Cambridge,
so I did my personal statement all of that stuff and I got through to the interview stage and I
have never been so intimidated in all of my life, it was just so out of my comfort zone, I
was from a small village near sunderland in the northeast and I thought it was
really important to get dressed up, I felt like educating rita or something, I went to
cambridge really dressed up and just encountered lots of people from private schools who were
wearing trainers and jeans and t-shirts and clearly hadn't worried about the way they were
presenting themselves to go to this interview, so I realized I was wearing completely the
wrong thing, really, I thought that being smart was a good thing but apparently it was not
and I went to the interview and just completely fumbled my words. I just was unprepared, not
for the intellectual questions that they were going to ask me, but just the environment
itself, I'd never been in an environment like that before and I fluffed the interview and
I didn't get in, I mean I was predicted to get the highest grades butI didn't get in, I was not
very good at I guess articulating those feelings in the moment, plus as I said I felt very
intimidated and I was a shy person back then, I was not a confident person, so it was not for
me at that time was Cambridge. I also applied to durham but didn't get in there but the quite nice
thing, strange thing, again trying to find meaning when there is no meaning particularly to be
taken from these things, is that mr m also applied to cambridge and to the same college that
I applied to, we had our interview the same day, we didn't meet each other but we had our interview
the same day, and didn't get in, we applied to the same college at durham and didn't get in,
and then we both ended up going to edinburgh and living on the same corridor in halls and then
started dating and got married so you know it all worked out quite well in the end, plus edinburgh
university is amazing, would highly recommend it to anyone, we had the best time, it is the most
wonderful city and if I could move back there I think I would. Kind of on a similar note someone
said what is your relationship to your accent, speaking as someone whose accent also changes? And
someone else said I've noticed that your voice has changed over the years of you being on booktube,
is this related to your accent or not? It's actually two separate things, so as I mentioned
I'm from the northeast of england so I did used to have a mackem accent, not a really really
strong one because my dad grew up down south, my mum's family are from the northeast
but I definitely had a mackem accent or geordie accent kind of interchangeable, so I
would speak like this “this is how I used to talk, I used to have an accent like this and I still
have such a soft spot for the northeast accent and can slip into it and I enjoy writing poetry
in that kind of dialect and performing that” but I don't speak like that anymore and it's not a
conscious thing that I did. I lost my accent quite quickly after starting university. I'm someone who
when I speak to someone who has a different accent to me I will often imitate that accent which can
be embarrassing I think it's an empathy thing and yeah anyway when I went to university nobody
else that I was speaking to had a geordie accent, everyone was speaking in lots of different
kind of accents and that just meant that I started speaking in entirely different ways and
it wasn't because I didn't want to speak like that and nothing like that it just happened and now
this is how I talk. I suppose you wouldn't be able to place geographically where I was from, you'd
probably assume that I was from somewhere further south, but I still have short a's so I'd never say
baaath or paaath very weird just ‘bath’ and ‘path’ and I don't feel weird about that
accent except for when I go home and I get on a bus and I have to ask for a ticket
and I will put on a geordie accent and say ‘can I have one of the Nook please?” because I would feel
so self-conscious not having a geordie accent, so that's when I feel self-conscious about it but
not the rest of the time. It is very very strange and for the person who said that they noticed
that my voice had changed over the past few years that's not related to my accent it's actually
related to EEC, it's a very minor thing but I have a very dry throat now which is not really
combatted by drinking lots of water it's just the way that my body works it's related to my
eyes being drier and my eyesight and all of that because it's all connected, so I now have quite
a gravelly voice which I didn't used to have, kudos to you for noticing that though. Okay
so we've got trousers, dungarees and a skirt, let's make a t-shirt. Someone asked in fact
I had quite a few questions along the lines of this particular question: what does your sight
loss look like for you at the moment? And someone else said I know that you were learning braille
what technology has helped you as well? okay so oh this is actually quite difficult
to cut… so for any of you who are new I am losing my eyesight and I have made
videos about that which I'll link in the description box down below. Sight
loss is a very strange thing because I think or rather I know that society
thinks about it in quite a selective way. I think that when we think about losing
our vision we think about darkness, blackness, not seeing anything and I think the statistic is
something like 90% of people who are blind can or do have light perception, can see certain things,
it may be just outlines of light or where light isn't, it may be specific colors, it's very rare
for you to see nothing at all if you are blind. I am as you may be able to tell nowhere near that
at all but that's just something I wanted to flag before talking about side loss because I think
there are lots of misconceptions about sight loss, and I think also when we think about sight
loss we think of it as a painless thing, I don't mean emotionally painless at all but I mean
physically painless, that it's a malfunction and then we just can't see for whatever reason and
that's not the case for me personally. The way that sight loss works for people with eec syndrome
is there are quite a few different factors as I mentioned with regard to my throat being dry
your eyes become very, very dry, so I have to lubricate my eyes with drops every hour every day,
I can't see in the morning when I wake up unless I use eye drops, I can't open my eyes without them
in the morning without getting a corneal abrasion. I have blepharitis which is a separate issue
but that causes vascularization which is probably the only bit at the moment that that
you personally could see if I showed you my eye, in fact I'll put a I'll put a picture here you
want to see my eyeball, okay this is my left eye and you can see the vascularization
there which is the blood vessels and that's relating to having blepharitis so I have
vascularization now that I didn't used to have, my eyelashes grow into my eyeballs
which they didn't used to do, I have lots of corneal abrasions and scarring and
it's particularly bad on my left eye, my right eye is actually doing all right. I've got a very rough
little t-shirt two-toned t-shirt I'll do close-ups of these in a bit. The process of me losing
my sight is actually through damaging my eye because the cornea can't replace itself properly
because it's so dry and I get all of these these scarrings and then that transcends into
something called limbal stem cell deficiency which is an incorrect programming in
my genetic makeup which means that (like with my hair loss, with alopecia) my body
will replace the corneal stem cells with scar tissue as a means to protect itself, and there is
no cure for that, corneal transplants don't work so that whole process is very painful not just
emotionally but physically I can't tell you how painful it is sometimes. Ao anyway what
does my eyesight look for me right now my left eye it's like… I'm just looking at it and trying to
work out how to describe it to you, it's like constellations, that's how I would
describe it, my cornea is so scratched and scarred I have it's like having loads of floaters,
everyone knows what a floater looks like, loads of those but almost like they're joined
together by lines as well so it is like having constellations on my eyeball which sounds very
beautiful but isn't particularly beautifulI Ot helps if I'm reading things in a lower light
because bright light obviously makes those more visible to me and it means that it's
more difficult for me to concentrate on text and therefore my eye gets dried out even faster
and tired and it gives me a headache, but it's not it's not bad yet, it's just definitely
worse than it used to be, this past year it has accelerated quite a lot which has not
been a fun thing to have to come to terms with, but as for the question about learning braille
which I am doing because it's easier to do that as a sighted person, it's a good tool to have
but of course as the rest of the question was what technology has also helped you? I've been
looking into assisted technology just because I want to learn about it in advance and there
are so many amazing things out there, I will actually link molly burke's channel down below
where she talks about how she uses technology as a blind person. Apple products in particular
are incredible for accessibility for this reason but accessibility and technology is something that
I've been thinking about more recently anyway not just to do with my eyes but because
my hands are deteriorating too because why would it just be one thing
when it could be lots of things? I have been looking at technology-based
things and I've been sharing that with some of you and I know that's been helpful and not just
technology-based things but tools in the house and things that I use in the kitchen, utensils
and how that interacts with ectodactyly, so my assistive technology has been for
eyes but mainly for my hands and it's been interesting to explore that, so I bought a stylus
for when I am creating thumbnails especially on my iphone and I bought this Sugru which I mentioned
in a favorites video which is it's like play-doh but it sets really hard and this is great for
grips if you need a better grip on something. For my phone I've been definitely using voice to text
a lot a lot more, that's the primary way that I now use my phone and obviously anyone can use that
you don't have to use it because your hands hurt or you're finding it difficult to type or you have
you know sight issues you can use it for any any reason you want to, and I'm sure that lots of you
probably do use that, so for instance “hey siri, send a text to my mum” “what do you want to say?” “hi mum comma thank you for the
flowers comma they're really lovely xx” “your message to mum says hi mum, thank you for
the flowers, they're really lovely xx okay ready to send it? Yes I do have my mum in my phone as
mum campbell that makes a quite a lot of people giggle, but something else that I use which again
may be very obvious but when I mentioned it on instagram as accessibility some people didn't know
that this was a thing that you could do and they said that it was really helpful so if you have
a message open here, voice text is just here,you press this so “hello comma I am speaking and you
are typing out the things that I am saying full stop I hope that you are having a great day full
stop new line new line what else can we talk about question mark let me show you how else you can
type full stop.” The voice recognition on apple products is really good um but what you can do
is instead of typing each individual word you can drag between so let me ….I mean this is a weird
angle so let me see so “thank you, this is another way you can type” so you can do that instead
and that saves you like pressing each individual letter, it's definitely less strenuous to do and
something that I personally find very helpful is using inverted screens where the background is
black and then the text is white that's helpful to do on my computer if I'm looking at a lot of
text but yeah as I said there's a lot of assistive technology which is amazing and a lot of it is
not stuff that I that I need to use now at all but it's great to be able to learn how that works
in advance um and know that that's there for me. I've just done four pieces of clothes but I
think I might just leave it at four for now I'm going to attach those to this um and let's go
and put the flowers that my mom sent me in a vase and then we can go to the woods and
we can hang up these fairy clothes. Oh pals, this is very anticlimactic.
I really thought that I had some small wooden pegs that I could use to
attach the clothes to the string but I don’t. The only things that I have are various
paper clips but I don’t want to use those because they may hurt some animals, so I’m going
to have to order some small wooden pegs online and then take this to the woods later this week. So if
you would like to see how this project turns out, follow me on Instagram and I will post a picture
over there, and I will also post a picture of the fairy door that Mr M makes too. Let’s
go and look at the flowers my mum bought me. I hope that you enjoyed this video.
I'm not really sure how to categorize it apart from I suppose life chats, life
update whilst making some fairy clothes. I would love to know how you are in
a comment down below please tell me let's have a chat and I will see you for another
bookish video very soon sending lots of love bye’
